Saturday, January 12, 2013

Well, it looks as though the transplant team may be making a liar out of me. The transplant team is advocating for James' discharge, because of the risks of remaining in hospital, including hospital-acquired pneumonia or other pathogens that roam these halls. The TPN team is responsible for the suggestion that James will remain in hospital for a few more weeks, but it seems as though there has not been communication between the two teams (in regard to James' discharge plan, that is). Wouldn't that be nice? It comes down to a risk versus benefits argument for keeping James in hospital. Do the benefits of remaining in the hospital for weight gain outweigh the risks that are associated with hospitalization and immunosuppression? It is a difficult question to answer, because James' nutritional status is an essential component of transplantation. The ideal solution would be discharge with an order for TPN at home. This remains unattainable without provincial coverage from British Columbia for extended care in the home environment. We cycle back to the beginning of the conversation. A decision will have to be made at some point. 

For now, James has rather limited mobility in the hospital, with an IV pole always by his side, and the dangers of leaving his room and contracting an infection. He sleeps a lot, and forces himself to eat between naps. I am concerned that James may become increasingly weak with muscle loss from remaining in bed all day. He has been going to the Transplant Gym three times a week, but that has its own limitations (and frustrations), because of James' muscle fatigue and his budding relationship with an IV pole. He still has that incredible determination to push himself through the essential parts of the exercise routine, but it may not be enough. The possibility of pulmonary rehabilitation was mentioned among the doctors today, but that too, has its own complications as an out-of-province patient. 

I've hit the late afternoon wall, and I am too exhausted to even complete sentences in my head. In short, James and I are coping as well as can be expected, and moving forward in most respects (or at least, in the areas of most importance). That's all for now. 

 love. love. love.

6 comments:

  1. Hello Adena, I have been following your blog for awhile, and you and James are the true meaning of love and acceptance.You are both an inspiration to so many.I think of you both often and will continue to pray for James. Keep the faith ,it will happen soon. Sending love and prayers. Try to get a little rest. xoxox Donna

    ReplyDelete
    Replies
    1. Thanks, Donna. We appreciate you love and support! xoxo. love. love. love.

      Delete
  2. Hugs to you both and prayers for patience, clarity for the team and rest sweet lady, rest.

    ReplyDelete
    Replies
    1. Hugs! Thanks for talking with me yesterday!

      Delete
  3. Hi Adena,

    I can only imagine how trying these times are for both you and James!! Please remember that there are so many people rooting for you guys and if there is anything that you need you must not hesitate to reach out to us, that's what support os for!!! This is a huge thing to take on yourself... I know that you are strong and James is an ultimate fighter, but at the end of the day you both need to rest your minds and your bodies...
    Keep your heads held high and keep smiling that beautiful smile!!
    Hugs!!
    Kristy
    xxx!

    ReplyDelete